There were moments when we were in the NICU with our twins that I really thought they would never let us bring them home. I thought we’d be one of those families that spends years in the hospital with babies who never knew anything different. The challenges our little ones faced seems so huge to me.
Little Neala contracted medical NEC (you can read a bit more about this in my earlier post). She had a PIC line placed and was being fed only IV nutrition for around 14 days and had full body x-rays every 6 hours for 3 days. We were lucky enough to have a nurse who was hyper-vigilant and saw the signs and symptoms right away. And we were even luckier that little Neala was strong enough to pull through with only medical treatment and no surgery. We met a mom who’s son had contracted NEC several times and undergone 4 surgeries.
This photo was taken just hours before Neala was diagnosed wtih NEC.
Even when we were moved to the ICN (intermediate care nursery) I didn’t feel like our kids were out of the woods. Neala had a terrible time gaining weight, and still does…though she looks more like a baby and less like a plucked chicken these days! She suffers from terrible reflux and is still on medications to treat it. Her liver and gall bladder were slightly damaged by the IV nutrition she was on for so long because of the NEC, though both seem to have recovered. Her head is also growing at a rate faster than the docs are comfortable with, but an MRI last week came back with nothing of note.
Poor little Rylan had to have bilateral inguinal hernia repair. When they whisked him away (I say whisked because he was in a moving isolette and they walked fast, my legs are short so it seemed like they were running, not because it was an emergency) I thought I’d be totally fine. Everyone assured me that it was a very standard operation that the little ones recover from quite well. I couldn’t hold back the tears and spent the next hour and a half terrified that the docs would come out of the operating room with that look you only see on TV shows like Grey’s Anatomy… ” We’re sorry, he didn’t make it.” But he did make it! And did great! And recovered well! And is totally fine and his scars are almost not visible anymore! Again, it could have been so, so much worse.
Rylan recovering from his hernia surgery.
The most terrifying thing that both kids suffered from were what we all affectionately called “bradys,” short for bradycardia which was defined as their heart rates dropping below 80 and usually their respiratory rate would drop too. Every time the brady alarm would go off I would cringe and try to act calm, but it was so scary, so, so scary to think about my little baby’s heart slowing down so much that it might cause permanent damage. Sometimes they would require stimulation to bring their heart rates back up. Neala’s reflux caused bradys and there were several times that we were feeding her when she would brady and then turn totally purple and basically stop breathing. It was horrifying. We had one nurse who would give us the daily report as, “No A’s, B’s or D’s! It’s a good day!” A’s in, no apneas (when the baby stops breathing), B’s as in no bradycardia, and D’s as in no desaturations of oxygen level in the blood.
But still, with all of this, and feeling like the doctors were just keeping the babies in the hospital to keep them company, I feel lucky. I know the doctors, nurses and all the support staff did the very best by our children and we are so, so, so lucky. So many people have it so much worse. Seventy eight days flew by, though it’s still crazy to think that to date, our babies have spent more days in the hospital than they’ve spent home with us.
In the few months they’ve been home, I’ve been so thankful that they are healthy, and that the rest of our family is basically healthy too. Many people commented on my last post saying how sorry they were for us and the loss of such a great piece of property and history. There is nothing to be sorry about, the Rice family had many, many amazing years at Brush Ranch, and the most important thing is that we all still have each other and our memories.
I hadn’t intended this post to fill the white space of the page with semi-sad ramblings, but that’s how this reads to me. Please put on a happy tune and re-read (I do not personally recommend Pharrell’s “Happy,” as I can’t stand that song, but here’s another of my favorites from summer camp days…this particular version I find especially hilarious with the suggestion of singing such a beautiful song in rounds). We are happy and healthy and feel so, so lucky to be alive with our amazing family at our side! I now know where the term “miracle of life” comes from!
Sweet grandpa with Neala and grandma with Rylan…chowing down!